Pontifical Academy for Life

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On March 31 and April 1, 2017, the first PAL-LIFE meeting was held in Rome, dedicated to the study of palliative care.

Nunziata Comoretto
2017-04-24

During the first PAL-LIFE meeting,
which was held in Rome on March 31 and April 1, 2017, the participating experts
provided a description of the growth of palliative care (“PC”) throughout the
world, highlighting in particular the opportunities and barriers to its further
development and implementation in various geographical-cultural contexts.

First of all, the growth of PC is a
not homogeneous, even within individual geographic regions. There are many factors that influence the
development of PC, beyond what are traditionally considered most significant,
such as economics (Sr. Yong). In Europe,
for example, where PC is probably most fully developed, two factors have been
crucial: the presence of charismatic
figures able to promote the special character and value of PC in specific
socio-cultural contexts, and the ability of persons in those various contexts
to translate the "novel" concept of PC into working programs of
formation and research (C. Centeno). In
developing countries, the commitment of churches and charitable organizations
to health care and education offers one of the principal opportunities for the
diffusion and development of PCs. In
some contexts, social capital is still a resource that can support activities
benefitting needier population groups.
In Africa, for example, social capital has given rise to PC delivery
models that are "created" locally and are “original,” compared to
models imported from other countries (E. Luyirika).

The biggest obstacle to the
development of PC programs globally is the lack of awareness of their existence
and specificity. This
"ignorance" affects all stakeholders—ordinary citizens, media that
provide information about end-of-life issues, healthcare professionals, including
facility administrators, and government officials.

Another obstacle is present within
the medical community, which does not always "intend" what PC
offers. Some representatives of
contemporary medicine, limited by their “scientific” orientation, consider a
holistic approach to the patient, with the special importance that PC gives to
psychological, social, and spiritual care of the sick and their families, as a
kind of "do-gooding” that is of course possible, and even praiseworthy,
but not essential to clinical medicine.
PC is thus "trivialized" (E. Bruera) and many healthcare
professionals resist integrating PC into the protocols they develop for their
patients. Similar obstacles are set up
by hospital administrators who devise structures based on a “health as a
product” model with measurable results.
Of course, based simply “on the numbers,” any care offered to incurable
or terminally ill patients is inherently a “bad investment.” In the view of those administrators, PC
represents an expense that is hard to justify because it is delivered to
patients whose prognosis is death, not healing.

In many societies, PC also suffers
from cultural misunderstanding, albeit for varying reasons. In some cultures there is resistance to the
use of opioid analgesics because their use is misunderstood or because of their
possible side-effects that are compared to euthanasia. In other cases, it is the misuse of certain
PC procedures (e.g., deep sedation) that leads to opposition. Misinformation and economic reasons are the
basis for the lack of governmental enthusiasm for PC that is common everywhere,
and they are responsible for the scarcity of funding for PC, even when
governments are generally willing to fund other types of care. (D Mosoiou).

It is important to overcome these
cultural barriers that, both in and out of the medical profession, refuse to
recognize the problems that PC wants to address, as well as PC itself, even to
the point of open hostility—a kind of “palliphobia" ( E. Bruera).

Another potential barrier to the
implementation of PC mightcould have its genesis, if we can use that term, in
PC itself. PC runs the danger of losing
its specific differences, such as its holistic attention to the person, to concentrate
on symptoms and organic conditions, forgetting what in the patient is
intangible. (C. Centeno). This danger
can be glimpsed when spirituality is treated as only a complementary aspect of
research rather than a primary one. (Ch.
Puchalski). Spiritual accompaniment is an indispensable element of assistance
to the seriously ill or terminal patient:
for many of them, the priority at the end of life is to be at peace with
God and to pray (E. Bruera), and leaving them in a situation of spiritual suffering
easily results in their asking for assisted suicide.

In many countries, governments and
organizations give no formal recognition, and therefore no adequate support,
for PC activities by governments; but also in countries where such recognition
exists, it is often just "pallilalia" (E. Bruera), "all
talk" that takes on a purely formal character and remains completely
ineffective on a practical level.

In some ways overarching poverty and
a lack of developed PC go together. For
example, a serious problem in many geographic-cultural areas is the limited
access to opioids for pain management (S. Alsirafy). The concerns in this area are the same as
those noted in recent decades in developed countries—the fear of creating
dependence, the fear of causing death, the lack of trained pain management
technicians. These are some of the
reasons why government PC policies, are not implemented, even when they
exist. The result, however, is that
under these conditions death is terribly painful (in India, for example, twenty
percent of suicides are committed by persons with a chronic illness) (M.
Rajagopal). A characteristic that is
increasingly shared between developing countries and those in the West is that
social capital, once an important resource, is almost completely
exhausted. This lack will open the
doors, socially and culturally, to euthanasia, which in many societies finds
one of its chief justifications in absence of adequate care for the dying. (K.
Pettus).

The lack of a
specialized personnel is a factor that, worldwide, limits the development of PC
(Sr. Yong). Nevertheless, especially in
countries where PC is less developed, the training of specialized healthcare
professionals is a priority that should make use of international cooperative
training programs. (L. De Lima); and it is true that many countries are
dependent on foreign aid for numerous aspects of their benefit programs,
including their PC programs (E. Luyirika).

Even faced with these conditions,
which are not without their obstacles, the scientific PC community is confident
that, where it tries to bring about an increase in PC possibilities in a given
area, it will also be able to take credit for general improvement in medical
and societal culture in that same area. (M. Rajagopal).